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LS under control after months! :)

Posted , 14 users are following.

MapleSyrup
MapleSyrup

It has been 5 months since being diagnosed with LS. At that time my symptoms were really bad (6 o clock tear, labia minora shrinking, white all around opening, cuts and itchiness). I used clobetasol every day for 3 months (I would either have a quick soak or shower most of the time before applying clobetasol and massaging in for a bit), then after that it went down to two times per week. I rinse after I pee with a peri bottle and then apply either emu oil or coconut oil, and use sudocream when going out for long periods of time to protect skin. At home/alone I never wear underwear and always wear loose clothes. Have been using A LOT of coconut oil for sex and found certain positions to help avoid tearing. The doctor told me she couldn't even tell I had LS by looking!! 

It's not cured obviously but I feel like I am in control of this awful disease. .It's so important to use the clob- it really does help with the inflammation and makes the skin Healthier. And the no underwear thing. I truly believe that has helped a lot. 

3 likes, 49 replies

49 Replies

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  • Guppy007
    Guppy007 MapleSyrup

    Posted

    Hi, that's great news.  I remember how stressed you were! 

  • Guppy007
    Guppy007 MapleSyrup

    Posted

    Hi, I meant to ask what sexual positions have you found to be the best.  Perhaps its difficult to describe but I am interested.
    • donna60875
      donna60875 Guppy007

      Posted

      Hi yes I was going to ask this question also but didn’t like to intrude could you tell me also as I can’t seem to feel away that works for me thanks 
    • MapleSyrup
      MapleSyrup Guppy007

      Posted

      not difficult to explain wink Man sits on the couch and woman goes on top facing man, the woman has control which is important when dealing with LS. This may not work for everyone but it seems to keep the pressure off where I tear. 
    • Guppy007
      Guppy007 MapleSyrup

      Posted

      Hi, yes I think your right.   

      So, basically, any position where the women is in charge is the one to go for because you have control..thanks

  • janie27576
    janie27576 MapleSyrup

    Posted

    Hi That is great news , I am still debating on using the Clob, i am using the Aloe/turmeric oil mix and the Emuaid and it seems to be helping but i have some fusing that really got my upset and scared and depressed , but i am feeling alot better on that too. so good luck to you and i will try the coconut oil to have sex but i am so scared to even go there and its been like 3 months now with out any but i really do want to make my husband happy, hes supporting  me but i would like to please him... i will try that thank you janie
    • Guppy007
      Guppy007 janie27576

      Posted

      Hi Janie, what I found which helped enormously just before sex was to coat a vibrator/dilator with lube, insert it once and you're good to go, everything then slides in more easily, it takes some of the discomfort away as everything is lubed inside.   

      I know this is probably TMI for some but there is no other way to say it. eek

    • janie27576
      janie27576 Guppy007

      Posted

      ok Guppy thank you , i will try that and no all of us need to know any kind of info for our sakes, right ladies? janie
    • MapleSyrup
      MapleSyrup janie27576

      Posted

      I think (as the doctors have explained) that you must use the clob, it helps stop the inflammation. Without that, you are only moisturizing the area. Moisturizing is very important but needs to be done in between clob until it is under control. 

      Coconut oil is messy, but it smells decent and it's not very expensive. Just lather up and try to relax. I found it took a few tries and some tears before we actually had sex. Tears were from fear, embarrassment, sadness,  not physical pain. 

  • cleo15
    cleo15 MapleSyrup

    Posted

    That's really good! Clob didn't help me after the initial first time but I concocted a potion that does help me. I think everyone is different in this respect. Yes! I go commando every chance I get too, it is really helpful and I wish I had done it years ago when my symptoms first started...I love harem pants from Marks and Spencer! 

    Hope you continue to be free.

    • MapleSyrup
      MapleSyrup cleo15

      Posted

      thanks, I am still always worried about another flare up. For instance I was on vacation and spent he majority of it in a bathing suit, I do have some sensitive areas and a got a tiny cut on my clitoris. I don't think this is a flare up but more of a reaction to wet tight bathing suit. 

  • Guest
    Guest MapleSyrup

    Posted

    i am finding the clob is stinging an open raw patch i believe was once upon a time my labia ..it looks like a fleshy blob now but i caught it the other day and it is sooo sore and painful .I am terrified of going to my Gp as i have a fear of them.Is the burning /stinging normal on an open cut? I have noone to ask about this and don't know what to do I am in the uk I have been having twice daily baths and applying vasaline to the sore blob.ask its agony when i pee.

    I feel alone and scared its cancer

     

    • karen23320
      karen23320 Guest

      Posted

      Alison- Take a deep breath! A very small percentage of LS patients get cancer, so the chances are very small. I had several ulcerated- raw open sores on the inside of my labia and I put Emuaid Maxx on them , they were all healed in 10 days. I switched to Emuaid regular after that and hv been fine since then. I use either  Medline soothe and cool moisture barrier with Aloe, Vit.A, D, E , or coconut oil to moisturize everyday, afyer every pee. If I feel the slightest tingle I use Emuaid regular. And when we hv sex, I use V- magic for lube. 

      Hope this helps! 

    • Guppy007
      Guppy007 Guest

      Posted

      Hi Alison, what you are describing is an open sore, just one of the horrible symptoms that we sometimes get with LS. 

      I believe that the Clob is too strong to use for open sores and cuts.  What I suggest you do is to stop the Clob, and start using something like Desitin, a baby bottom cream, or something similar...dont use anything else on your Vjay it for a few days.  When you Pee spray with water afterwards, pat dry and reapply the Desitin cream, it is important to hardly use any..a TINY amount.  After a few days the sore/cut might start to feel a bit better, then and only then you can begin to dry it out which means just bathing once a day, avoiding ALL oils and creams, and using a powder puff to gently pat the sore area with something like cornflour/flour. 

      Hopefully this will work for you as myself and others have had success with it. 

      Please let us know if it works for you as it may help others to know this.

    • janie27576
      janie27576 karen23320

      Posted

      hi karen where do you buy vmagic? i want to try it, i notice i have like dryness in the vulva area, like the outside of that area, i dont know if its cause i have been using the baking soda spray and its drying my area or its the LS.. i have a fissure , i think that what its call or a white line that it bothersome way back close to my butt. i have put on emuaid max and it helps but it comes back. i am gonna make an appt with a vulva specilist today but the appt dates are so far out... wish i could call and they would see me that day but thats not gonna happen and plus i have to pay out of pocket cause medicare turn me down for that..just sends me to gyn that are cold and send me away with clob. ans says its and age thing..janie
    • karen23320
      karen23320 janie27576

      Posted

      Hi Janie- I got the vmagic on Amazon with free shipping. It is a beeswax/ Honey base. If you are looking just for a moisturizer for dryness, organic, coconut oil is good and much cheaper ( $3.99 for a whole jar), than V Magic- I use it for lube during sex and it is very soothing afterward too. 

    • janie27576
      janie27576 karen23320

      Posted

      Hi Karen, ok i will check that out, or i was thinking or trying out Crisco, the gyn for moisturizer to use that...i have just been using the Aloe/mix and Eumaid Max but i will try that and see how that goes, also i have the Estriodal but afraid to use that... dont want a flare up... i have been having a small rash that comes and goes...my appt with a vulva specialist is in Oct. 9. so see how that goes ...janie
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